My first major symptom showed up just a couple of months before I turned 18. Four years of internal resistance + pushing my body, several injections, a total of 20-30 doctors/physiotherapists, 1 open-surgery and a couple of minimally invasive surgeries later I was finally diagnosed with EDS Type 3 — a label that has since been attached to my name.
There was a huge confusion around the terms “#Elhersdanlos Type 3” and “#Hypermobility Syndrome” but I knew #life wasn’t going to look the same, no matter what the world wanted to refer to this condition as. I remember knowing deep in my core, that life was about to take a drastic turn and there was no going back. I felt so relieved when my day to day experience was validated and that for once, I wasn’t “too young to have pain”. At that time, having a label that summed up my experience, a logical reasoning behind my suffering mattered so much and that attitude helped me pave my way towards getting a #diagnosis.
Every time I look back, I am convinced that everything had to unfold the way it did in order to bring me where I am today. I wouldn’t have been here had I not trusted a part of me that just knew something was off #balance; that my body needed more of my attention. That #persistency was necessary to find a label to my symptoms. Today, this label helps me in making practical choices towards my #health. It helps me when I need to find the right kind of help or seek medical attention. It helps me when when I need to keep up with changes and advancements in science and technology. However, this label doesn’t change anything for me on a day to day level. It doesn’t change the fact that my body functions in a more complex manner and has very specific needs. It hasn’t made the acceptance process any easier.
Of course, while the underlying symptoms of all those dealing with EDS (same type) might be similar, how one experiences these symptoms, the intensity and degree of severity can be vastly different and individual to each person. I think understanding this allows each of us to have our experience and also be compassionate towards one another.
How I try to cope with the unpredictable nature of my health (8.5 years and counting)
1. I make all decisions related to my health on my own because no one else knows my body better. Patient empowerment is so important when dealing with a chronic illness.
2. I trust that my body will respond if I give it enough time and care. I need to allow it time + listen to it closely.
3. I choose to work on acceptance rather than fight the inevitable. It allows me to work with my circumstances from a space of love rather than hate.
4. I acknowledge limitations, suffering and pain and put more focus on opportunities, dealing with emotions and recovery.
5. I choose faith over fear; vulnerability when necessary over strength all the time (it can be pretty unrealistic to be strong all the time).
6. I protect my energy. I’ve learned to say more ‘no’ and less ‘yes’ both politely and affirmatively.
7. I do not track my progress based on what I can do in relation to others.
8. I keep myself updated about the condition + advancements in science. This way, I’m able to make informed and choices.
9. I try to find miracles on a day to day basis. It keeps my hope going for something greater.
10. I am grateful for what I have and who I have around for me (Quality > quantity, as far as possible).
11. I celebrate every little progress I make. Sometimes getting out of bed is progress too.
12. I make flexible plans and routine. Self-care is always at the top of the list.
13. I’m honest about my health with myself and people
14. I do not ask “Why me?” anymore. That question leads to a downward spiral and takes you straight into a shithole.
15. I look at my health as just one part of my experience on this planet. It’s not my health which defines who I am as a person; it’s how I respond to it that does. I can’t just rid my body of the illness but I can definitely work on giving it less power.
I end up having to work with my body as if I’m working with a child. It takes lots of time, effort, love, compassion and consistent practise.
It’s not easy but every response is worth it 💗
I haven’t been too well since the start of 2017. I’ve been dealing with bedriddening pain + gut related issues and the effect of all of it on my activity level has been quite significant. My health has taken a major dip this year and I’ve spent a large part of my time re-figuring things out.
This is life – it’s never predictable and to stay afloat, we have to keep finding a “new” balance + remember to be patient with ourselves through it. Sometimes it may feel like we’re starting all over again, however, it’s crucial to put our focus on the fact that we’re also wiser, stronger, more courages and a little more ready each time.
There’s been more happening in my gut and I’m currently working with an intergrative GP, a gastroenterologist and naturopath to find the next best step. The amount of decision fatigue I’ve experienced over the last five months is not funny. Apart from a rather serious back flare up + sublaxed shoulders, something so simple, straight-forward and enjoyable like food turned into this massive, overwhelmingly exhausting thing that required/ requires constant awareness and thinking.
For the next three weeks or so, I’ll be going on two very strong medications, known for worsening all existing symptoms. I’ve have been specifically told to not take this treatment too lightly and it might make life seem a tiny bit miserable. As someone who deals with excruciating pain and indescribable fatigue on a daily basis, I honestly don’t know how much worse things can get. However, I have also seen myself at my worst before and hence believe it’s important that I take extra precautions and have help available for me if necessary. Thankfully, I do have a small group of people to count on if needed.
On a brighter note, I’ve got a couple of workshops to teach and close friends to meet so I’m really keeping my fingers-crossed and spirit high :) I’m aware of what may happen, giving my body extra time off, saying more no and less yes (trust me, it’s needed when you are functioning on limited energy) and taking everything one baby step at a time.
I hope everyone’s doing fine.
In case I’m not around much, Happy June! ❤️
P.S. This post is not about defeat or seeking validation, and most definitely not one asking for pity. If it sounded like any of these to anyone, please let it go. I’m just sharing and giving an update of how things have been this year. Please keep in mind that it is very much possible to mentally accept and deal with things gracefully WHILE experiencing a great amount of physical discomfort.
Here’s the thing about looking like a perfectly healthy individual when the truth is something else altogether
A bus has to wait for you to get into uber and the driver thinks you’re this fit and fine woman taking her own sweet time when you’re actually calculating every action and movement because both your shoulders are still hanging off loose and no body sees it.
You rush a little bit, your joints dislocate. Everyone’s fine. You’re not. Accidents happen and insurance companies might reimburse you a certain amount but that’s not going to get you your health back.
Well, you can’t expect every other person on the street to know your story and that’s unrealistic. I’m writing this post based on nothing but fear, a very natural fear that doesn’t paralyse me mentally or emotionally (or even physically) but serves as a reminder to stay fully aware because that’s all I can do to protect myself. That’s all anyone with any form of disability can really do. And yet, despite all your awareness and presence, things happen. Shit can go wrong because there are so many other factors at play too.
Point being, let fear serve and guide you instead of letting it paralyse you. Acknowledge fear as a self-protection mechanism and do what’s needed from there. Whoever says they’re not afraid of anything are definitely lying to themselves and the world.
It’s one of those days when I’m in desperate need of help and I don’t want anyone around either. It’s that knowing that your body needs absolute rest that makes you realise that you can’t do without help. All I’ve managed to do since I got up at 5:30am this morning was walk to the kitchen using my cane and make myself coffee hoping my shoulders don’t just pop out while pouring hot water into the cup.
Fatigue is out the roof, pain levels of different joints are all over the place, my back is spasming and my are shoulders loose. I’ve been twisting and turning uncomfortably throughout the night, afraid of either of my shoulders popping out or going numb because I accidentally slept on them for too long.
My shoulders having been snapping in and out without me doing much and it freaking hurts each time it happens. I’ve had to be extremely cautious through last few days and measure each of my movement. The looseness in both my shoulder joints is making it difficult to “find” rest in any position. The tightness around the muscles neck and mid back is adding a fair amount of pain and stiffness (this is a natural response of the body, a self-protection mechanism). My arms and palms are hurting and I just don’t want to touch or carry anything.
What’s worse is that I haven’t been able to tape my shoulders over the last few days as my skin is still healing from a bad tape allergy. Somehow, the lack of proper support apart from my sling has been making me a little apprehensive. That said, this is all very familiar now. I talk about being present and listening closely to your body and today my body demands me to not move. I’ve had work over the last few days which were supposedly rest days but work is fun and I can be a workaholic so I’ve had a hard time practising some self control.
Today, however, there’s nothing that needs to be done except to tend to my body. Everything must wait and anything that can’t, isn’t needed. We have to learn to be patient with ourselves and let our bodies take some time to adjust to a new routines and changes. Prioritise rest and recovery, go one step at a time and ask for help when needed🌷
Beautiful day. Beautiful space. Beautiful people. Beautiful artwork. Beautiful lessons.
Here’s me setting up everything, one pen at a time. And check out my wobbly left shoulder holding on to its dear life. 🌷
I had such a wonderful time teaching the Mandala Making Workshop last weekend. Somehow, those two hours made me feel more alive than anything else has in more than half a year now. The most beautiful thing about the experience was the very fact that it brought people from different walks of life together, for one shared purpose: to give a break to their busy minds and let their creativity run wild.
We had a retiree who was looking for ways to keep her mind active, a yoga teacher exploring ways for self-expression, a mandarin language teacher who had forgotten that she can create, a computer engineer who needed her calculating brain to quieten for once… none of them had ANY background in mandalas or pattern-making, hadn’t done much research and yet they were there because it seemed right…I mean, isn’t this just WOW?!
Even though it is not uncommon, I am still so amazed at how the whole process shifted something for some of the participants. For me, being there and seeing that in itself was such a deeply moving experience. To be honest, I’m still letting it all sink in. Everything from the place, to people and to the tea we had seemed right. I don’t think I could have asked to be anywhere else on that Sunday morning but there, teaching, sharing and learning. I’m fatigued out of my mind and yet so full in my heart. Let’s see how long it takes for me to recover from all of it physically but I know I’ll be okay and I’ll do this again when it’s time. My body needs rest now. Conducting a workshop after half a year of being 90% bedridden is a big step ahead for me. And it didn’t just happen overnight… this big step comprised of many, many small steps over the last so many months and years…
One day at a time
One step at a time.
(What it’s like being single with a chronic illness)
Every once in a while I come across someone or the other who would ask me questions like:
“Why are you still single?!”
“Have you seen yourself?!? You can find anyone! Just go out! Go online! Why do you want to be alone? ” (that’s really beyond the point)
“How are you managing without a partner?”
“Isn’t it better to have someone around at least?”
“Don’t you get bored alone?” (I honestly don’t)
“Don’t you want someone to help you get out of bed?”
“Why don’t you just go out and see what comes to you!?”
Here’s the thing about dating and chronic illnsss – it’s not straight-forward. It’s not ONLY about feelings and love anymore. Living with pain 24/7 and dealing with an illness that’s going to be with you for the rest of your life (well, till science finds a solution or a miracle takes place) changes your perspective about pretty much everything. Every day is a new day and life is as predictably unpredictable as it can get.
What is considered rather “straight-forward” in the context of dating now involves much more complicated factors like compatibility in terms of lifestyle and practicality of the relationship. Often, these are also the topics people prefer not to discuss in detail — who wants to talk about how it is like to wake up and sleep with so much pain?
Who likes to talk about guards, slings and tapes?
Who wants to run through your pain management programme?
Who wants to know what it’s like to have to take a break during showers because of fatigue?
Who wants to discuss how to deal with an arm that sublaxes? Or what to do when your back flares up and gets you bed-ridden? Who wants to listen to your prognosis?
Who actually wants to educate themselves about someone else’s health?
Who wants to know what it’s like to make a different career choice not because you are incapable, lazy or not ambitious but because your health must be your priority? (I believe it’s a choice I’ve made for my health not because of it)
Who wants to know what it’s like to pretty much build a life all over again from scratch?
Who wants to understand what it’s like to be hopeful, grateful and practical at the same time?
Who’s willing to talk about responsibilities? Partnership? Who wants to talk about hospitals, bills, insurance and disability aid when there are so many other fun things to discuss? Right?!
Who’s willing to see what an invisible illness really looks like?
And most importantly, who’s going to be able to look past that illness, despite it being a major experience for you, and realise that it’s just one aspect of who you are?
Unfortunately, the things that people usually shy away from are exactly the things that need to be talked about. That’s the case with all of us but even more so when you’re dating someone with a body that doesn’t function as per “normal”.
From the last so many years of literally dating myself, hating my body (for a while) and now respecting it so much has taught me such valuable lessons which I wouldn’t exchange for anything. I’m very happy that I chose to give ‘me’ all the time I deserved. Somewhere I had forgotten how much I needed it.
There’s no going back for me anymore. I don’t regret choosing to date myself. I don’t regret deciding that it was time to be on my own and manage with whatever support I had and to make the best out of it. It was painful, every bit of it and yet I say this – i absolutely don’t regret experiencing loneliness and realising how amazingly freeing it actually is. It has brought me closer to who I am as a person, who I always was and has opened doors to so many opportunities.
I couldn’t quite have imagined sharing my story with everyone and being of help to some people had I let things happen the way the old me thought they were “supposed to be”. I wouldn’t have been here feeling somewhat at peace with everything. I wouldn’t have been able to grow out of fear, trust myself and be grateful for all that I have without leaving a few things behind.
Dating myself for years altogether has only taught me patience (what’s an empowered patient without patience anyway?) and the need for acceptance of self. If I hadn’t learned to accept who I was becoming, I wouldn’t have become so clear about my wants and needs. If I hadn’t learnt to let go of the things that no longer served me, I wouldn’t have been able to embrace my new reality. I most definitely wouldn’t have been able to create space for anyone else in my life.
I couldn’t have imagined having someone else with me through the last few years. I don’t think it would have proven to be helpful for either of us. In some ways, I’m grateful that I spent those years alone, figuring so many things out all at once. Now that I have enough space to embrace who I am, I have enough space for someone else too. Keeping that in mind, no matter how sad it can sound to some people, my full-time job will always be self-care and I can’t be with someone who wouldn’t see that.
It’s really ok to be single and deal with a chronic illness AND it is ok to be sick and be in a perfectly healthy relationship. What matters ultimately is whether you get to honour your health.
85 % Dark Chocolate + Coconut Popsicles. Pure bliss! 💕
I could’ve done with more dark chocolate but you know, I didn’t want to push it. I made sure to stay within the allowed quantities of each ingredient and frankly, these just turned out magical. As usual, my friend couldn’t believe these were SIBO friendly and this time, neither could I.
Here’s what went in them:
6 pieces of dark chocolate + 8 tablespoons of coconut milk + 1 cup of coconut water + 2 tsp pure vanilla essence + 1 tbsp raw clover honey + 3.5 tsp raw Cocoa powder + 2 tsp pure coconut oil. This recipe made 4 popsicles.
The easiest way of making them would be to blend all the ingredients excluding dark chocolate, pour into your moulds and pop them into the freezer for about 8 -12 hours. Before serving, melt dark chocolate + coconut oil and drizzle over the popsicles. You could also just dip the popsicles into the melted chocolate if you wish.
I made these in three parts because I wanted to add extra dark chocolate pieces inside each popsicle and also have bits of plain coconut cream in every popsicle. So we had the main body, chocolate flavoured coconut cream + parts of honeyed coconut cream + pure dark chocolate pieces and drizzle.